On Tuesday of this week, my mom and Michael and I went to Children's Hospital for Michael's bi-annual endocrinology appointment.
We practiced saying the doctor's name on the hour and a half drive up there. Michael responded "Dr. What? Dr. What?" every single time I asked him to repeat the doctor's name-- so he definitely kept us entertained and laughing.
I scheduled the appointment for 8:15am which meant that I had to feed Michael on the way up there (which was preceded by a finger prick), as well as administer two types of insulin in the car-- not my best mom-strategy. But we made it work.
Michael was so super well-behaved at the appointment and I couldn't be any more proud of him. He's nearly three and staying entertained in a tiny exam room for a couple of hours is rough, but he did so well.
His last appointment was in November. Although it would be ideal for him to be seen every three months, this hospital is just overbooked with caring for kids with diabetes. So we have to settle for a visit every 6 months. A lot can happen in six months as we all know.
When Michael was diagnosed last August, they did a blood test (done by a finger prick), called an A1C. This blood test shows the average of Michael's blood sugars over the past 120 days-- or 3 months. This is why it would be great for Michael to be seen every 3 months so that we could stay on top of his A1C. In August, we were given a number that corresponded to what Michael's blood sugar numbers had been in the 3 months preceding his diagnosis. In November at our initial follow-up, his A1C had lowered by over 2 points. That was great! We felt like we were on Cloud 9. At the end of that appointment, we got the news that we wouldn't be seen again until May. I was more than a little nervous-- 6 months without an A1C? Six months without a doctor actually putting eyes on Michael and seeing how he's doing? It seemed like six months would be an eternity.
And in some ways, it was. Although I speak to diabetes educators from Children's Hospital on a weekly basis over the phone to report blood sugar numbers, I wished that we were able to be seen by the doctor at 3-month intervals. From November to May, a lot of things happened. Michael had a horrendous stomach bug in January. This put him in the ER for low blood sugar mixed with high ketones. He's also had ear infections since November. He's also had strep since November. He has been sick four times since his last endocrinology appointment. Sickness brings high & low blood sugars. This can skew an A1C reading. Overall, Michael's blood sugars tend to stay high.
Michael had an A1C test on Tuesday. I told my mom that some people view the A1C as a report card, but that I wasn't going to do that. I knew the number had probably risen, so I was preparing myself for an increase of 0.1 to 0.2 of an increase. To my dismay, his A1C was higher than it was at diagnosis. It had risen 3.1 points. My heart sank and I felt defeated. And honestly, I still feel defeated today.
We were told to look at insulin pumps again as a means to better control Michael's diabetes. I've already been contacted by a pump educator to research our options. In some ways, it's offensive. It's almost like someone telling you "You're not doing a good enough job on your own. You need additional help to make this work." But we are holding our heads high and are looking into the choices of pumps available to us for Michael, and we are deciding if that is the best route for him.
Since I've been calling in blood sugar numbers to the diabetes educators, they know how high Michael's blood sugars have been. They have calculations and formulas that they input numbers into to see if we can increase his insulin at all. He's on two types of insulin (one that is fast-acting which he gets at mealtimes, and one that is slow-acting and stays in his body for 24-hours). These diabetes educators have described caring for Michael's diabetes like "throwing a dart at a wall." No one really knows what to do. The educators will input a number into a formula to try to increase his 24-hour insulin, but the result is that it would drop Michael's blood sugar too much. They will also input numbers into calculations to figure out if we could give him any more fast-acting insulin with meals, but the result is that it would drop his blood sugar too much. Most times, I am told that they will check with the doctor on call because they want to run things by the doctor. Even doctors have said they are worried that changing the amount of insulin would drop Michael's blood sugar too much, which could lead to lows-- which are very dangerous.
However, on Tuesday, we get to see a "doctor-in-training" and then our endocrinologist and they're just not the ones we're in contact with every week. So instead of feeling like you're speaking with people who know that Michael is continually high and that there is little they can do, we find ourselves speaking to a doctor-in-training who is gung-ho and wants to increase Michael's 24-hour insulin by 2 units. Our endocrinologist said I got to make the final decision because I'm the mom and because it's a free country. I said I did not want to increase the 24-hour insulin by two units because the educators were too nervous to even increase it by one unit. The endocrinologist agreed with me. He said two is probably too much. So he asked that we increase it by one unit at night. I told him that Michael had a pattern of being low overnight when he received this insulin at that time of day. I was told to try it anyway.
So we did.
And guess what?
Michael went low two nights in a row.
Last night, we had to wake Michael up and give him jelly before we ever even made it to bed.
Not fun for parents to be sitting in bed strategizing about whether they should take shift staying awake all night, or setting multiple alarms throughout the night to make sure Michael made it through. We went the multiple alarms route. Creeping into a room in the night to check a blood sugar, to listen to the sound of his breathing, to feel if he's hot or cold, to make sure he's not in a cold sweat, etc. The list can go on and on.
We chose today to nix the increase in the 24-hour insulin. We will go back to what we were doing pre-appointment since we were seeing positive results within the last two weeks. We had recently decided to split the dosage of his 24-hour insulin so that he would get 3 units in the morning and 1 right before bedtime (the change that the doctor-in-training made was to give 3 units in the morning and 2 at night-- and what I declined to do was 3 in the morning and 3 at night which was what he was originally suggesting-- Can you even IMAGINE how low Michael would have been if I had followed directions blindly without offering my input as a parent???).
Within two weeks of splitting his 24-hour insulin dosage from 4 units in the morning to 3 units in the morning and 1 unit at night, we have seen improvement. His blood sugars are coming down into a normal range and staying even throughout the day (and night!). So we decided that we're going to stick with that plan and no longer give the increase at night that the doctor-in-training wants us to do.
The appointment itself left me feeling like I was exiting a boxing ring. Both of the doctors were very polite (albeit one was assertive, but still polite), but I felt emotionally exhausted. Because the A1C indicated that we couldn't do our jobs right as parents. But yet, we are doing our best and we are doing what we're told from the educators. We count every carb. We portion his meals & snacks. We calculate insulin and we administer it. We are doing our best. And he is a toddler, which only means diabetes plays even more unfairly.
When we were leaving the appointment, I met a mom who had a four year old son (diagnosed at 17 months), and an 18-month old with cystic fibrosis (and who was diagnosed with type 1 just two weeks ago). With tear-filled eyes, I told her she was Super Mom.
The lesson I took away was, there's always someone who has it worse. That day left me longing for Heaven all the more, where no one will have illness or disease, and when we will experience true rest.
I pray pray pray for a cure. And I know that I am doing my best as a mom and that I love my little boys with every fiber of my being.
Prayers are always appreciated.
Until Next Time,
Much love, Reba